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The Unsung Struggle to End the ‘Curse’ of Fistula in Bangladesh

More than 70,000 women in Bangladesh suffer from a treatable condition that often leads to ostracization and poverty. The story of one Bangladeshi woman’s freedom from fistula shows the challenges of eradicating a health problem that can destroy lives.

For over 40 years, Fatema Khatun suffered from fistula. She was disowned by her family, who couldn't stand the overpowering smell of urine, and was reduced to begging to survive. “I thought this was a curse and there was no treatment," she says. Amy Fallon

COX’S BAZAR, Bangladesh – For almost 45 years, Fatema Khatun suffered one of the greatest ignominies a woman can endure and accepted it as her fate. In the end, it took just 37 minutes for a surgeon to give her back her life.

“It’s like magic. I still can’t believe that I no longer smell bad,” she says, sitting on a bed next to a doctor in a tiny hospital.

For decades, Khatun, 60, from Cox’s Bazar, in remote southeastern Bangladesh, had been living with fistula, a tear in the vagina or rectum, often caused by prolonged labor. Left untreated, it can lead to uncontrollable leaking of urine or feces.

According to the United Nations Population Fund (UNFPA), more than 2 million women in sub-Saharan Africa, south Asia and Arab countries, Latin America and the Caribbean grapple with this preventable and normally treatable condition. Statistics for Bangladesh are hard to come by, but the first fistula survey in the country – conducted by the government, EngenderHealth and UNFPA in 2003 – showed there are 71,000 cases in the country, and an additional 2,000 occurring every year.

Sathya Doraiswamy, chief of health of UNFPA Bangladesh, says more attention needs to be paid to fistula, which is often neglected as it’s not an emergency health issue.

“It’s not life threatening, so nobody’s going to die with a fistula. But a woman still goes through a great deal on the physical, mental and social fronts. It’s a human rights challenge.”

“It’s not life threatening, so nobody’s going to die with a fistula. But a woman still goes through a great deal on the physical, mental and social fronts,” he says. “It’s a human rights challenge.”

Khatun was married at the age of 14; by 16, she was pregnant. But her husband took no interest in her pregnancy, and her parents could not afford antenatal care for her.

After delivering a stillborn baby, Khatun developed fistula. Her husband left her immediately and eventually remarried. Her parents later died and her siblings disowned her because they couldn’t stand her constantly smelling of urine. “I used to try to hide it from everybody, but the smell was so bad I was unable to,” she says.

Eventually a stepbrother built a shed for her to live in outside his house, but she would still only come outside to beg for money to survive. “I used to stay away from people and sleep on a cloth because I was always wet,” says Khatun. “I thought this was a curse and there was no treatment.”

In January 2016, after more than 40 years of social isolation, Khatun was approached by someone from the HOPE Foundation for Women & Children of Bangladesh in Cox’s Bazar. Through a partnership with the Fistula Foundation, HOPE covers the cost of transportation to their local hospital, surgery and other expenses for women suffering from fistula. But first, it has to find them.

Four or five times a month, Abu Musa Ashari, HOPE Hospital’s supervisor and fistula team coordinator, and three midwives armed with leaflets travel to villages up to 100 miles (160km) away. They arrive unannounced, looking for fistula patients by relaying information about the symptoms to the community.

“One man said, ‘There is a woman like that who is a beggar,’” recalls Ashari of tracking down Khatun. “He said, ‘She probably has this disease. She smells bad.’”

It took a few attempts before they found her, but when they explained to Khatun that she could be operated on for free she was over the moon. Two days later, she was taken to HOPE Hospital. According to the team at the hospital, the 40-bed center is the “leading provider of fistula care in the country.” It was founded in 2005 by Dr. Iftikher Mahmood, who is from Cox’s Bazar, but now lives in the U.S.

Dr. Nrinmoy Biswas has performed most of the 285 fistula surgeries that HOPE has facilitated since 2011. (Amy Fallon)

Fighting fistula means addressing the factors that lead to women having longer, riskier deliveries, which can result in tearing during childbirth. As many as 12,000 women die from pregnancy or childbirth complications every year in Bangladesh, says UNICEF. Most women in the country deliver at home, and Cox’s Bazar has one of the nation’s lowest rates of births attended by a skilled health professional, according to UNICEF’s 2012-2013 Multiple Indicator Cluster Survey. According to HOPE, there are about 5,000 women with fistula living in Cox’s Bazar.

HOPE was set up to focus on women in the vulnerable community of Cox’s Bazar, where there are poor communication and transport systems and literacy is low. They also have a training center for midwives on the same premises as the hospital and eight rural medical centers in southern Bangladesh.

Since 2011, the organization has facilitated about 285 fistula operations, most of them performed by Dr. Nrinmoy Biswas, the hospital’s resident surgeon and the only surgeon in the country who’s certified by the International Federation of Gynecology and Obstetrics.

According to a 2013 report, even if fistula was prevented entirely today, it would take another 294 years to deal with the backlog of cases in Bangladesh. But HOPE is talking to UNFPA about eradicating it entirely from certain regions of the country, a goal the organizations believe is achievable. There are 102 doctors in Bangladesh, with its population of almost 160 million, trained to tackle fistula, says UNFPA. But along with the necessary skills, a stronger commitment from surgeons and the government is also essential if fistula is ever going to be eradicated, says Doraiswamy.

“Fistula is not just a hole in the birth canal of a woman, but also a hole in the public health system of the country,” he says.

Nokima Begum, 22, suffered for four years with fistula she developed after a 72-hour labor. Her husband left her, remarried and then tried to take their child. Her mother and sister disowned her. With a complex case of fistula, she underwent four operations before she was finally repaired.

Cured of the fistula she developed after a 72-hour labor, Nokima Begum now works as a counselor at HOPE Hospital, sometimes feeding patients who are too ashamed to even eat. (Amy Fallon)

Now Begum works at HOPE Hospital counseling women with the condition. “I feed fistula patients because many are very ashamed,” she says. “They don’t want to eat, and they’re nervous, so sometimes they don’t want food.”

HOPE is currently building a maternity and fistula clinic to meet demand for treatment, which it plans to open in 2018. And Ashari says he would love to open a rehabilitation center one day, if he ever gets the funding.

But even without the dedicated fistula clinic or the rehabilitation center, the quick, simple surgery already has the power to transform a woman’s life. Khatun has been free of fistula for a year and now works for HOPE in one of their medical centers.

Ashari still remembers the day Khatun left the hospital after her surgery. “In our culture, touching feet by hand is a display of respect and love. When Fatema left the hospital dry, she was trying to do this to me,” he says.

“She could not believe she was cured. It was amazing to see.”

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